More updates

Lately a lot of people have been asking me if we've heard back from Cleveland or not and how Philippe is doing. So here's an update:

Philippe is on a different medication now called Topamax. It comes in capsules and he takes it in the morning and at night. We had to slowly build him up to the dose that the doctors want, we couldn't start it off at the full strength and right now he is at a level that if the doctors feel like they need to increase his dose they can. This medicine has reduced the number of seizures he has, before he was having 2-3 seizures a week and now he's only had 1 a week so far. My guess is that the doctors will probably increase the dose to try and reduce the seizures.

Also, for the last 3 months he's had some Gastro Intestinal problems, his poopy diapers are similar to what a baby's diaper would be, meaning that it's not a solid piece but it's always very runny and acidic, which frequently causes his bum to be red and irritated, or easily get yeast infections. So we have to change his diaper as soon as we can or else it gets bad and he cries since it burns and hurts. So to be able to address this Philippe got to go see an Allergist, we knew he was allergic to nuts and eggs, but we didn't know which nuts was he specifically allergic too and we wanted to find out if he was eating anything that he was allergic to and we didn't know about. We are still waiting to see a GI doctor, but the appointment is not until October?!?! Can you believe that, they did not have any openings whatsoever for new patients until october?! I'm sorry, but maybe you can help me here because I simply do not understand how it's possible to not have any openings with any of the GI doctors? Are there that many people that need GI attention right now that there's not one slot until almost 2 months away for him to see my son?! What do they do with emergencies, and shouldn't this be taken care of right away, what if within those 2 months that we are waiting for the doctor his condition worsens and causes some permanent damage on his digestive system, even though it could've all been avoided if treated promptly?! This right now is one of my biggest frustrations.

Also, we went and met with his Neurologist here in SLC Primary Children's, and had a talk, mostly to introduce him to Philippe and what his situation is. The sad thing was when we asked him if Philippe's epilepsy is something that he'll grow out of or something that will stick with him throughout the rest of his life... the answer:

Most likely... for the rest of his life.

I was quiet in that office. Many times had I asked myself that question, and many times I had given myself that same answer. But this was the first time that one of the doctors had  been so honest with us. My face was still, but in my mind, I was weeping as I am right now. 

I guess this is one of those things where you just feel so impotent and wish there was something you could do to make it go away, to make it so that he wouldn't ever have to worry about it and not have to be taking medicines his whole life. To make it where he could be able to do whatever he wants in his life. But sometimes that's exactly what you can't do.

Today while at church, I went over to the nursery to check on him and I saw my wife standing outside talking to one of the ladies that help there. As i got closer, I noticed that both of their eyes were teary. Later I asked Candice what happened and she told me this:

"A couple weeks ago Philippe looked into my eyes, and it was like looking into the eyes of an angel. He's a very special boy with such a sweet spirit. I'm so glad that I get to spend time with him because he has blessed my life just being near him."

I'm grateful for my son, he is indeed the sweetest and he's always willing to give you a smile. You bless my life too buddy, everyday! 

Your smiles make my day!